When Cameron James' 3-year-old daughter woke up covered in bruises one day in 2014, she thought little Elise had just banged her leg on something due to her poor balance.
But two days later, the bruising had spread and the toddler's skin was tinged yellow, the mother told The Tennessean.
The child was rushed to the emergency room, where doctors initially guessed that she had leukemia. But five days later, they got the official diagnosis.
Doctors determined that Elise suffers from atypical hemolytic uremic syndrome (aHUS), an extremely rare disease characterized by low red blood cell count and poor kidney function.
She'd require constant treatment in order to manage the symptoms, and it wasn't going to be cheap.
The drug, which can only help relieve symptoms patients with aHUS to improve their quality of life, can cost up to $500,000 a year, The Tennessean reports.
Luckily, insurance covered most of the cost. But medical bills still piled up for the family.
And three years later, the family was faced with more devastating news when Elise's father, James Shadinger, woke up yellow one morning.
He was rushed to the emergency room where doctors informed him his kidneys were failing. They determined it was a symptom of aHUS.
Shadinger and Elise were officially the only father and daughter in the United States to both have the rare disease. Cameron told The Christian Beat:
“It is estimated that for every 1,000,000 people, there are two with aHUS. To have two people in my own family makes us the ultra-rare of the ultra-rare.”
The father and daughter must regularly receive expensive treatment to keep the disease under control, but Cameron said their family has found a light in the darkness.
They're now using their story to advocate for affordable treatment for those with rare diseases. The mom said:
“It is because we are so rare that people want to hear our story. Only God could turn something so negative into a positive.”
And thankfully, the father and daughter are expected to have a good quality of life as long as they receive treatment.